Maddison Ohs, Tube Feeding

Nighttime Routine

Bedtime with feeding tubes and injections

Our daughter Maddison has never been one where we could just put her in a fresh pair of pyjamas and a clean diaper and lay her down to sleep. Because of Maddison’s disabilities, her nighttime routine is a little more complex. Getting her ready for bedtime includes some unusual steps; which includes a feeding tube and an injection. We recorded a video for our YouTube channel showcasing our nighttime routine for putting Maddison to bed.

I’ve put a link to the video in this post.

Continue reading “Nighttime Routine”

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Maddison Ohs, Tube Feeding

Graduating from the G/J tube

Graduation from Maddison’s G-J-tube to a G-tube

It’s been a long road to get where we are. Even the conversation around changing Maddison’s feeding tube from a g/j to a g-tube felt like only a dream just a few months ago. Yet here we are, the day finally came. March 9th 2019 marks the day we said goodbye to Maddison’s g/j feeding tube, and hello to the new g-tube.

*Video of tube change included* Continue reading “Graduating from the G/J tube”

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Maddison Ohs, Tube Feeding

Feeding Update: Feeding Into The Stomach

Trialing a transition from J-tube feeding to G-tube feeding (Feeding Into The Stomach)

I’ll start with a little feeding history of our daughter Maddison:

Maddison has been tube fed her entire life. It all started with what I shared in her birth story – that when she was born we knew something wasn’t quite right. We discovered in our NICU stay that Maddison had a bulbar dysfunction and lacked the ability to suck and swallow. Continue reading “Feeding Update: Feeding Into The Stomach”

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Maddison Ohs, Special-Needs Parenting

A Day at the Hospital

12-hr hospital trip and answers

On November 13, 2018 we had 3 appointments out at BC Children’s Hospital for Maddison. We were doing the 2-hour drive in on a beautiful sunny day from Chilliwack to Vancouver, BC. There was a lot of anticipation for the appointments ahead, and apparently a lot of nerves as well. A Day at the Hospital. Continue reading “A Day at the Hospital”

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Maddison Ohs, Mom Life, Special-Needs Parenting

We’re on YouTube!

Meet a Family of Ohs

On October 26, 2018, we took the plunge and launched our family’s YouTube channel! We’ve been sharing our life on our blog here, as well as our social media channels through Facebook and Instagram. But we’ve been wanting to be able to reach a larger audience – and hopefully impact more people – so we made our first YouTube video. Continue reading “We’re on YouTube!”

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Maddison Ohs, Special-Needs Parenting, Tube Feeding

Camping trip 2018

Our greatest adventure yet: camping with our Tubie

There is no doubt that I was extremely wary about taking Maddison along for our first camping trip. You see, a toddler who is fed through a feeding tube, and camping, aren’t really two things that go hand-in-hand.

But we don’t want Maddison’s medical conditions to give us an illusion that she is limited when she actually isn’t. Continue reading “Camping trip 2018”

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Maddison Ohs, Tube Feeding

Tummy Tunnels

Iron on patches for feeding tubes

Unfortunately, when it comes to finding clothes for a baby with a feeding tube, it’s not one-size fits all. Thankfully I was introduced to Tummy Tunnels™ shortly after Maddison had her g-tube placed. The iron-on patches allow for easy adaption to most clothing to accommodate access for the feeding tube.
Continue reading “Tummy Tunnels”

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Maddison Ohs, Special-Needs Parenting

Family Beach Trip 2018

Taking our Tubie to the beach

When you think about going to the beach with children, you know it’s going to be a lot of work, but for the most part it’s pretty straight forward. You pack the basics; towels, umbrella, snacks, floaty, sunscreen… You give them a bucket and a shovel and they play for hours.

Life with Maddison isn’t straight forward though, and I was slightly intimidated taking Maddison on her first real beach experience. Medically complex children tend to make things a little more… complex. But I did my best to think everything through ahead of time. I knew that doing something like a beach trip on a whim just isn’t possible,  so I had to make sure I did some serious planning before we left the house.
Continue reading “Family Beach Trip 2018”

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Maddison Ohs

Update: IMAGINE Research Study

10 Months later

Maddison Ohs has proven to be quite the mystery ever since she was born. And it appears she is holding on to that reputation. Even when we left the NICU, we went home without clear answers as to what was causing Maddison’s symptoms, or even the condition itself. It has been an ongoing investigation trying to understand Maddison. Continue reading “Update: IMAGINE Research Study”

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